20 years walking to fight MS

Wednesday

Jan 24, 2018 at 1:28 PMJan 24, 2018 at 1:28 PM

After 13 years, organizer Diane Winans looks for someone to take over walk

By Kathryn Ross

WELLSVILLE — The new year is bringing some changes to the 20-year-old Wellsville Multiple Sclerosis Walk, and to the awareness and treatment of the disease with which an estimated 400,000 Americans are afflicted, according to the Multiple Sclerosis Foundation.

In the mid-1990s, a 36-year-old Marlee Cannon was an energetic, busy mother with two sons, attending high school sporting events each were involved in, when she found herself unnaturally weak and unable to keep her balance when trying to climb the bleachers.

“I felt like an old woman,” she recalled.

After several trips to doctors she was eventually diagnosed with Multiple Sclerosis. After several more months she got the right treatment, and then she began to think about others.

“I knew I wanted to do something to make people more aware of Multiple Sclerosis and to get doctors to recognize the symptoms. I went on the Multiple Sclerosis website and found that there was an MS Walk scheduled in Wellsville that I wasn’t aware of. I called to sign up and they asked if I’d volunteer to organize the walk because they didn’t have anyone,” she reminisced.

The first Wellsville MS Walk was organized in 1998, with a small team of Cannon’s relatives, co-workers and friends taking the walk.

“I had a good core group with Eileen Drake, Sharon Osgood and Sherry Walton. We started from the Wellsville campus of Alfred State College, where we had permission to use the rest rooms, and walked to Shorts and then north on state Route 19, and eventually ended up back at the campus,” she said.

The next year Joyce Weimer, who had also been diagnosed with MS, came aboard and they worked again from the campus. Cannon had articles written in the newspaper about MS and its prevalence here in Western New York. The MS Foundation of Western New York had learned that the five counties of Western New York and northern Pennsylvania had the highest incidence of the disease in the U.S.

The MS Foundation reports that statistically, the number of people diagnosed with multiple sclerosis is twice as high in northern states (above the 37th parallel), about 110 to 140 cases per 100,000, as in other areas. The incidence of MS is also higher in colder climates, and people of Northern European descent have the highest risk of developing MS, no matter where they live.

In 2000, a total of 172 people participated in the MS Walk. Eventually the MS Walk was moved to the Washington Elementary School and in the following years nearly 1,000 people had participated in the Walks, and more than $39,000 had been raised to help find a cure for the disease.

For Cannon, though, it wasn’t the number of people nor the research dollars raised that she was proud of — it was the fact that more people had become aware of the disease and that local doctors were recognizing the symptoms, and that more people were getting the help they needed for this unsuspected disease that robbed them of their vigor and lifestyle.

When Cannon started her crusade, it was thought that MS was most likely to strike women in their middle age. Today, MS has been found to strike people from nine months old to people in their 70s, and it attacks both men and women, although the ratio of women with MS to men with the disease is 2 to 1.

MS is not considered an inherited disorder, but researchers believe there may be a genetic predisposition to developing the disease. For example, about 15 percent of individuals with MS have one or more family members or relatives who also have MS, according to the National Institute of Neurological Disorders and Stroke.

Diane Winans has led the Wellsville MS Walk for the last 13 years, having been with it since almost the beginning. This will be her last year as coordinator, and she is hoping that people who have expressed an interest will take over this worthy event.

“I started walking in the MS Walk after I was first diagnosed with MS. The first year I walked as part of a team from work, then I joined the committee. When Marlee (Cannon) stepped down after seven years I became the coordinator,” she said.

Under Winans the scope of the MS Walk has expanded. It is now represented at various events such as the Balloon Rally and the Main Street Festival.

“It is nice to be able to talk to people who stop by our booth and answer their questions about MS. We have one woman who lives out West and visits us each year at the Balloon Rally to find out what is new in the treatment of MS. In the last 13 years they have come up with more tests to diagnose the disease and there is now a wider variety of medication and treatment,” Winans said.

“We wanted to raise awareness and we’ve certainly done that, but we still need to raise more money for research,” she added.

Since Winans took over, the number of walkers has increased and in her 13 years, over $240,000 has been raised from walkers, paper sneaker sales and from an anonymous donor. In 2017 a total of $21,434 was raised. In total the Wellsville MS Walk has raised $279,484.71 since it began.

Today, Winans said research is showing that people are getting diagnosed earlier with the disease.

“They’re finding out that children can have it. While the younger you are the less likely you are to have MS, on the other hand if you are older you could have had MS for years and only as you get older are your symptoms becoming more acute,” she said.

Some of the warning signs of MS are:• fatigue that stays with you• blurry eyesight with pain in the eye• numbness and tingling in your extremities.

As Winans steps down with the end of the 2018 MS Walk (May 6), she hopes that others will take over and bring new ideas and thoughts to this two decades-long event.

“Keeping it (the MS Walk) simple has always worked for us, but things can change with new leadership. I’m sure most of the people who have been on the committee will remain and Marlee and I will always be around for advice,” Winans said.

The first meeting of the 2018 MS Walk committee is in February. Anyone interested in becoming involved with the event should contact Winans at 585-610-8382.

“Come to the meeting and find out what is happening and bring your ideas,” Winans said.

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